It’s Lose-a-Toe Monday

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     This morning has been all drama all the time. It’s spring break, and the boys are home from school. I take them to the grocery store, and I am not exaggerating when I say they are so insane that they don’t even notice when I buy the Easter candy right in front of their faces. The Easter Bunny hops on by and they are oblivious. At least I can check that item off my list. After we get home, the boys don their swimsuits and head for the backyard to play in the sprinkler while I put the groceries away. After that, I give them instructions to bathe themselves (they’ve learned how to give themselves a bath, which is great – moving toward independence!) and jump on the bike.
     Well, just as I’m finishing up with my workout, I hear screaming from the upstairs bathroom. I mean, wild banshee screaming. I think somebody has lost a limb for sure. Surely there is blood spurting everywhere. I think I might find a dying child up there.  I fly up the stairs at my-child-is-in-mortal-danger speed. When I get up there, I discover that both boys are in full-on panic mode. Yelling their heads off. The first thing I note is the utter lack of blood anywhere. Check one. The next thing I note is that Mason is naked on the bathroom floor, and his foot appears to be stuck under the sink cabinet.
     I somehow manage to stop everyone from screaming so that I can assess the situation by asking some questions. Corey has gone to his room and is not coming back at this point. He’s just scared out of his mind and hiding under his blankets. It’s better if he stays away, because there’s no chance Mason will calm down while his brother’s mad banshee wales continue. And at this point, I need some answers.
     Mason stops wailing, and, breathing hard but calming down, says, “I slipped in the water and my toe got stuck and I can’t get it out.” Thanks for being concise, kid. So I get down on the floor in my sweaty workout clothes and try to determine exactly how stuck his toe is while not slipping on the floor myself. The answer is not good. His toe is completely and utterly stuck. I realize that I will never be able to pull his toe out without severely damaging it. The force of the fall has completely wedged Mason’s big toe into the cabinet molding. I nail a smile on my face, and I tell Mason that everything is going to be okay. I then say a brief prayer that I have not just lied to my child and that he is not in fact going to come out of this without a toe. Then I consider my options.
     1) I can call Damian and have him come home and unstick Mason’s toe. But that will take at least 45 minutes, during which I will have a naked frightened child on the bathroom floor. That’s a no go.
     2) I can call 911 and have the EMTs or the fire department come and free his toe. This seems like a better/faster option, but this will still require Mason to wait, and the big loud fire trucks will probably scare both of my traumatized children even more.
     3) I can rip the front of the cabinet off myself. This seems like the best option, only I don’t have a crowbar.
     But Mason is starting to tune up again, so I choose option three. I decide to just Hulk it out and rip it off with my bare hands. This takes all my strength and three heaving pulls – no doubt due to the adrenaline rush brought on by my screaming banshee offspring – but I manage to pull it off and free Mason’s toe, which looks smashed and bloody. Mason looks at the ripped apart sink and says, “What if it never gets fixed?” I say, “I don’t care about the sink. I care about you.” Then I pick my shaking little boy up off of the bathroom floor, carry him to his room, set him on his bed, and get him a drink and his giant pink bunny for company while I examine/bandage his toe.
     The good news is, I think his toe is fine. He can bend it, he can walk on it, and all it really needed was some Neosporin and a bandage. But now I’m thinking this should be margarita Monday.

And the Great Agent Search is……

Over. No dice. I did not find an agent for my book. Which is okay. I knew it was a long shot. I need to remind myself that this rejection is not a reflection of my work. It’s a reflection of the book’s marketability. I heard, over and over, that while this work is important, it’s too niche of a market. Still, I’m glad that I tried this route first.

What’s next? I will try approaching small publishers directly. I think I have a better shot at that. But, if that doesn’t pan out, I will self publish. In that case, I think the people who need the book will find it, and that’s really the most important thing to me. I wrote the book that I wanted when Corey was diagnosed with tricuspid atresia. But let’s face it, Corey has a rare defect, and (thankfully) there aren’t a lot of people walking in my shoes.

However, having said all of that, I still feel that CHD awareness is important. Extremely important. There are so many people who have no idea what it means to have a child with CHD. If you say, “My child has cancer,” everyone understands you immediately. If you say, “My child has a congenital heart defect,” many people look at you like you’ve got three heads.

So I thought about ways in which I might reach a wider audience. And I think I’ve found a solution. Fiction! I’m writing a novel about a woman with a heart child. I’m about 2/3 of the way finished, and I’m hoping that, if it’s good enough, it will reach that wider audience that I am striving for.

Wish me luck….

Time Machine

If you had a time machine, where would you go? Or should I say “when” would you go? People are fascinated by the concept of manipulating time. It’s a common theme in pop culture, splattered throughout literature and the movies. From a Wrinkle in Time to “Back to the Future” – who hasn’t thought about the idea that time is linear? 

This week’s WordPress writing challenge is about this very concept. If you had a time machine, what would you do with it? Personally the biggest temptation would be going back in time to “fix” moments of regret. Hindsight is always twenty-twenty – who doesn’t think, “If I had to do it all over again, I’d do X, Y and Z differently?” But that’s a dangerous road to take.

I think about the idea that, had I waited for one more month before trying to conceive Corey, I might not have a heart child. I might not have had to live through the hell that is the early life of a child with tricuspid atresia. He wouldn’t have been forced to suffer through it either. Maybe my first child would have been healthy. That’s a tempting thought, if I am honest. The child would not have been Corey, though – he or she would have been a different person entirely.

And of course I love Corey with all of me. I can’t imagine a life that doesn’t include him. Getting to know him, getting to know myself through him, has been a privilege. No matter how much time I have with him, I know it is a gift. And at my core, I believe that I am meant to be Corey’s mother – it’s my path to walk in life. In which case perhaps the time machine wouldn’t make any difference.

There’s also the idea that, should you alter one regrettable part of your past, you will also inevitably alter many more aspects of your present and your future. If there was no Corey, there would be no Mason either. Mason was conceived at a time that worked between Corey’s surgeries. No heart child, no surgical timeline, and suddenly there is no Mason. He (or she) is someone else entirely. Or perhaps there would be no second child at all.

Think about all the hundreds of important decisions you’ve made in your life. All of them led, in one way or another, to where you are right now. Right this moment. Alter any of them, and perhaps you are in a completely different place, married to a different person, living in a different state or country, doing a different job with a different boss. Instead of Grace the cat you’ve got Fido the dog, because your new spouse in this different reality is allergic to cats.

It’s wild to contemplate. So I think I know exactly what I’m going to do with my time machine. I’m going to borrow some TNT from my son’s Minecraft game and blow it to smithereens. Then I’m going to cook dinner for this family that I love in this house that I love in this town that I love. 

What do age and time really mean?

People often say that age is just a number. Anybody facing a midlife crisis probably thinks those people can go suck an egg. But perhaps it’s just another way to say “I am content with my life right now.” It’s blase, laissez faire, devil-may-care to contend that the number of years you have lived on this earth is irrelevant. It’s human nature to freak out a little when you reach a certain age. Though what that “certain age” is varies wildly from person to person. The concept of time has different meaning for each of us.

When I turned 25, I panicked a little. I thought, “I’m half way to 50, and my life is not what I thought it would be.” I was single with no boyfriend and no prospects, no children, no master’s degree, living with a friend and her four-year-old son. I was not happy. I did have a college degree and a good job, however, so I got over myself and decided to figure out what changes I could reasonably make. There was a lot of whining and several pints of Ben & Jerry’s involved in that getting over myself process, but I managed.

Age 30 was a blur. I got married the very month before I turned 30, and with the wedding, honeymoon, and then discovering I was pregnant the very first month of my marriage, I barely even noticed the changing of a decade. Unlike at age 25, at 30 I was happy with the state of my life. I’d jumped from the “go suck an egg!” camp over to the “meh, age is just a number” club. I was in good health, and I had no real worries. I felt indestructible, like nothing bad could happen to me – the way a person feels before tragedy has touched their life. 

But then my life went to hell in a day. October 15, 2004. The day my OB/GYN said, “There’s something wrong with your baby’s heart.” Time after that had completely different meaning. The days between my baby’s initial diagnosis with a congenital heart defect and the confirmation that he had a chance at survival were the longest of my life. They seemed to stretch on endlessly, like the tunnel in “Poltergeist” that elongated right before JoBeth William’s eyes as she’s trying to reach her child. It seemed impossible that she would ever reach the end of that tunnel and get to her baby. 

Time after those initial days changed in meaning as well. The first year of my son’s life was an eternity while I was living it. Heart failure, medications, surgeries, and the ever-present fear. But looking back on it now, it seems like a blur. Just a blip on the radar. I feel the same way about my second son’s first year. It was a completely different experience because he is healthy, but sleep deprivation is torture even if there isn’t an underlying note of fear. And so the first year felt long while I was living it, but now that he is seven years old, the baby days seem like a brief moment.

Which brings me to another age-related cliche that people like to throw at me mostly when my boys are acting like crazy brainless beasts out in public (e.g. the bowling alley birthday party). You know what it is. “They grow up so fast!” This phrase forces me to nail a smile on my face and remind myself that it is not okay to slap people in public. In private, feel free to slap away. If you’ve invited one of these people into your house, however, maybe you should slap yourself. But I digress. In any case, like most cliches, if I am honest with myself I feel the truth in this statement. My children are seven and nine now, and I do feel as if they are growing up too fast.

Because (wait for it) life is short! That’s right. I said it. And I bet you’ve said it too. Unless you’re a Mormon missionary in Uganda, in which case maybe you’re going with “life is long.” Regardless, time and age are all filtered through individual experience and human perception.

I’m about to face another decade change, which is what prompted this post on the Weekly Writing Challenge from WordPress. I’m not as panicked about this milestone as I was at age 25, but I’m not as laissez faire as I was at 30 either. Life is more even-keeled and normal these days, so perhaps I will take it in stride. But we’ll see on April 2nd. Maybe I’ll post pictures of myself proudly wearing a tiara with a giant number on it. Or maybe I’ll hide in the closet with a pint of Ben & Jerry’s. Or maybe I’ll buy a monokini from Victoria’s Secret and dye my hair orange and start using gangster words like “gat.”

I guess I’ll have to wait and see if age is really just a number.

 

 

 

A Letter from our Surgeon

We sent Corey’s heart surgeon, Dr. Luca Vricella, a Christmas card like we do every year. In it I included Corey’s first report card (all As, one B). I knew it would have meaning for the man who saved Corey’s life many times over, as it did for me. I wanted Dr. Vricella to know that his dedication and sacrifice to save the lives of children like mine is deeply appreciated, more than words could ever express. I wanted him to know that we think of him often, and I wanted him to see, with concrete proof, the kind of life my heart child has. How smart he is, how beautiful he is, and how none of it would be possible without this talented and selfless surgeon.

Today I came home to find a letter in the mailbox. Here is what it said:

“Dear Mrs. and Mr. Fleming,

It was wonderful to receive your delightful holiday card with wishes for the Holiday Season.

Many thanks for keeping in touch and the great picture of you with Mason and Corey. Hearing from families and watching their children grow happy and healthy is one of the true blessings of our specialty. Let me thank you in particular for sending me his 3rd grade school report card, it meant so much to me. When I took the liberty of sharing this with my own father, he told me that he wished that my grades were as good when I was in 3rd grade!

Although as always a little late, let me wish to you and your family a wonderful 2014, full of health, happiness and prosperity.

Sincerely Yours,

Luca Vricella, M.D.”

Corey’s going to pass out when I tell him his grades are better than Dr. Vricella’s! I love that guy.

 

Mardi Gras or Birthday Bash?

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The question is this: what’s wilder – Mardi Gras or my son’s ninth birthday party at the bowling alley? I am here to contend that my son’s party wins. If you’ve been to Mardi Gras, maybe you got some fun-colored beads. Maybe you danced all night in the streets. Maybe you sang one too many renditions of “Margaritaville” and woke up with a tattoo that said “Pat” on your butt, only you couldn’t remember who “Pat” was, or is, or if Pat even exists on planet earth. But I bet you didn’t have a bowling ball dropped on your foot by a third grader.

This year we decided to celebrate the heart-child’s birthday by partying at the bowling alley. Every birthday is a victory over his CHD, and apparently nothing says “in your face!” to CHD quite like a bunch of third graders annihilating pizza, cake, popcorn and ice cream cups all over a bowling alley. When planning the party, we thought it would be a great idea to invite 5 of Corey’s classmates to take over one lane. Then, to add to the fun, we thought we’d invite some of Mason’s friends and give a second lane to the younger kids. We had 13 kids total, ranging in age from 2 to 9. I don’t know where my brain was when planning this party. Possibly in my butt under that Pat tattoo.

Everybody who was invited attended. The party started out fine. Parents dropped off their children, said goodbye, and initially the kids all concentrated on getting their bowling shoes on and starting their games. The big boys were pretty competitive to start, trying to out-do each other and actually knock down the most pins. You know, the actual point of bowling. But then two things happened. First, one of the boys demonstrated his Olympic-caliber bowling skills by scoring two strikes right out of the gate, which deflated the rest of them. Second, another group of kids showed up for a birthday party in the two lanes right next to ours. And they were girls. Third-grade girls. What do you think happens when a bunch of third-grade girls show up to bowl right next to a bunch of third-grade boys?

Well I’m going to tell you. The girls totally ignored the boys. They were fully intent on setting up their game and getting down to business. So the boys decided to step up their game. This started with the boys pulling their shirtsleeves up and comparing the size of their muscles, loudly. Did that get the girl’s attention? Uh, no. So they stepped up their game again and started a wrestling match right in the middle of the lane. Excellent. Wrestle Mania meets Third Grade Bowling Party. And guess what? None of the girls even glanced in their direction. In a last ditch attempt to get the girls to look his way, one of the boys decided a good place to sit would be on top of the ball return. Which of course inspired other boys to give it a try too.

Meanwhile, on the lane with the younger kids, people were tripping and falling, getting their fingers pinched, complaining “he stole my ball!”, yelling for more pizza, and just generally trying to kill themselves and everyone around them. Again, really, what the hell was I thinking?

We somehow managed to break up the wrestling match between the older boys, get everybody off the ball return, and get everybody back into the actual bowling game. At which point one of the younger kids rolled a ball down the lane with enough force to push a feather about two inches, and guess what? The ball stopped dead in the middle of the lane. To solve this problem, one of the other kids decided to throw another ball down the lane. Very helpful. So instead of one stopped ball in the lane, we had two stopped balls in the lane. When I looked back there was a ball stuck in the gutter. This feat defies all known laws of physics, because the bumpers were up, making it impossible for the balls to even go into the gutters. Right.

Then one of older boys, not to be outdone by the antics of the younger kids, managed to pitch a ball across the lanes, over the bumpers, and into the middle of the girl’s lane. I don’t know if this was a Hail Mary to get the girls to look at him or if it was an honest mistake. Either way, I hid my face in my hands to cover up the burning red embarrassment on my cheeks. The grandmother of one of the girls shot me the look of death that only old ladies can master – you know the one. You’ve seen it. It’s scary. So I did what any well-adjusted woman would do in this situation. I ran and hid in the bathroom until the balls were all off the lanes. “Um, I just have to wash this pizza sauce off my hands. Be right back!”

By the time it was over the place looked like a war zone and my cheeks hurt like hell from nailing a smile on my face for two hours. But really, despite the insanity, I will say that it was worth it. Because Corey had a blast at his party, and in the end, what else really matters?

Athletes with a Congenital Heart Defect

The Sochi Olympics are in full swing, which got me thinking about athletes with CHD. Everyone in the world of CHD is probably aware of Shaun White, but there are some other noteworthy people who’ve managed to become athletes despite their special hearts. For example, I met Brian Roberts, major league baseball player for the Baltimore Orioles, when he was part of an event for children with CHD. He’s a classy and inspirational guy. Here is a list of 10 athletes with various defects, including Olympians.

Ten Athletes with a Congenital Heart Defect

1. Aaron Boone - former major league baseball infielder (bicuspid aortic valve)

2. Beau Casson - former Australian cricketer (Tetralogy of Fallot)

3. Lauren Holiday - Olympic gold-medalist in soccer (atrial septal defect - ASD)

4. Nwankwo Kanu - retired Nigerian soccer player and Olympic gold medalist (aortic valve defect)

5. MacKinzie Kline - golfer who played LPGA tour (heterotaxy syndrome)

6. Jane Lee - marathon runner (Tetralogy of Fallot)

7. Ramie Mohlman - US Olympic gold medalist, FILA World Cup of Sombo Wrestling 2006 (unspecified heart valve defect)

8. Brian Roberts - major league baseball player for Baltimore Orioles (atrial septal defect – ASD)

9. Brandon Rouse - defensive tackle for Clemsen (coronary hypoplasia), passed away after collapsing and going into arrhythmia

10. Shaun White – Olympic gold-medalist in snowboarding (Tetralogy of Fallot)